Saturday, July 17, 2010

So after a very rough last week, I made several phone calls Friday to the doctors to let them know what was going on... We had an upper GI scheduled for Monday where they put barium in her belly and follow it to make sure everything is still in place. We had been giving her bolus feeds (about 3.5 ounces at a time) and it just seemed like she started having problems overnight after every feed so we were afraid that her fundoplication had come undone or something else was seriously wrong...

The good news is that everything is still in place and her belly seems to be functioning fine. However, they were very surprised to see that her belly looked almost completely full after one ounce. Usually, an 8 month old can handle 6-8 ounces at a time by this point, so we were thinking 3.5 or even 3 ounces would be just fine. We had no idea SMA affected the belly like that. We still don't have answers why her belly can only hold that much, why it's not growing, etc. but the good news is that we've switched to continuous feeds (where we just give her a little bit at a time through the entire day with the feeding pump - an ounce an hour) and Skylar's been much better!

She still has moments of struggle during the day, but nothing compared to last week... I seriously thought it might be the end. Thankfully, I was wrong :) The only bad thing about continuous feeds is that the feeding pump on the IV pole with her feeding bag is just one more thing attached to her all day. It's so much harder to move around the house now because now I have to deal with the feeding set up and the pulse ox machine (also attached to her 24/7) and suction machine (which just goes everywhere with us). We're constantly adapting.

We've had a good week so far. Kyle's birthday is this Sunday (tomorrow) so we're going to try to hang out as a family and enjoy the day. Skylar will be 8 months on Monday :) so there's a lot going on! Next weekend, I am going to be in a wedding in Valdosta and it will be my first full day and overnight away from Skylar... That will be tough, but I am so thankful to get to be a part of my friend's wedding. She has Cystic Fibrosis (CF), which is also a genetic disease, and is fighting hard and doing well - a true testimony to beating the odds! She's been a great encouragement to us as well as an amazing example how to live life.

During the coming week, we have an appointment to get Skylar some new wrist splints since she's outgrown her old ones... We'll have to go again the following week to get the ones for her feet/ankles made. Hopefully, these doctor visits won't be as stressful because she shouldn't have to get undressed or poked or weighed...

We're gaining momentum on facebook with the number of fans we have! The Clemson Alumni have really stepped up in supporting us as well as some KD Alumnae... Thanks! I don't know if we'll hear anything or when we'll know if they have or have not chosen us, but I'll certainly keep everyone posted as I find stuff out. We really do feel extremely loved by all of our friends and family and couldn't ask for better people to be surrounded by during this time whether we get the makeover or not. Thanks so much!!!

Other updates: I still have to follow up with the nursing company about whether we can get that or not. We are in the appeal process for medicaid after being denied the first time (which we expected) and have applied for the Katie Beckett waiver. It's a painfully long and tedious process that should be against the law in situations like ours where time is of the essence. I swear they do everything they can to draw it out as long as possible and make it as hard as possible so that people give up. I won't get started...

We haven't gotten a van yet - we have a lot of shopping to do and we want to make sure we can find a decent one used so that we don't use all of our money on the van. We have a lot of other expenses and bills so we want to use our money wisely, but we're still excited about getting one and hopefully it won't be too much longer! A leader at our church as been a big help with helping in the hunt for one.

Oh! I can't believe I almost forgot to tell you this... Skylar laughed during a movie for the very first time Thursday!!! We were watching Monsters, Inc. and all of a sudden, she just giggled. I looked right over at her and she was just staring at the movie smiling. It was awesome! I laughed at the fact that she laughed at the movie, and we both started laughing again. She's such a cutie!

Anyway, that's about it for now. Hope everyone is having a great weekend! Peace.

Thursday, July 8, 2010

So there's a ton of stuff going on with the preparation to make sure Extreme Makeover Home Edition has everything they need to choose us (mainly a video to introduce our family and our house). We've been filming all week, then realized we were filming everything but the requirements, lol... Something that would've been good to look at before starting! So we're almost done and will send that in hopefully the beginning of the week. If you're on facebook, please "like" our fan page and share it with your friends so that we can show them we have support and people to come out and help :)

This past week has been great because we've had family in town that we haven't seen in a long time! They hadn't met Skylar before so it was really fun to have them hang out and stay a while. Kyle and I got out on July 4th for the first date in months and months. We put her on bi-pap early and left her with Kyle's parents, aunts, grama, and cousins - I think between all of them, they could handle entertaining her :) We have some more family in this week, but Skylar's been struggling some, so I feel bad that we haven't been the best hosts...

This past week has also been really really rough emotionally for me. After adjusting her feeds, Skylar had a great weekend! We thought the problem was solved and everything was good. She seemed happy... Tuesday we had a lot of company in the house and it might have just overwhelmed Skylar, but that was the first day of her struggles this week. Wednesday was even worse - the physical therapist from Babies Can't Wait came out (a state funded program that provides in-home therapy and other things to babies in need) and showed me some new things. She's only coming twice a month, which I thought was lame at first that they wouldn't come more to help me, but after Skylar's reaction, I'm kind of glad. Skylar dropped into the 70's twice while the lady was working on her. I feel like I need to say this woman is super nice - I really enjoy her teaching me things to help Skylar, and she's got a great personality. However, I don't know if Skylar is just really sensitive about other people touching her or if she's really in pain from this woman moving her around, or maybe both, but it was a hard day. Once the physical therapist left, she never really recovered. It was a battle all day.

I haven't been able to give her a bath all week because she's not stable enough to put her in the tub and I don't trust taking her pulse ox machine off. It sucks. I am so tired of this. I am not mad at Skylar of course, and I'm not mad at God, I am just upset at the whole situation. I am mad at this disease. I am angry that it is slowly taking the life away from my daughter. I am tired of the freaking pulse ox alarm not stopping no matter how persistent I am at suctioning, I am tired of the dang mucous that builds up over and over, and I am so sick of seeing my daughter fight for her life. I will continue doing every thing I can to help her until it comes to the point of needing life support, and I certainly don't wish for that time to come any time soon. But I just hate the whole thing. Yesterday evening, if Skylar hadn't been in the house with me, I would've screamed at the top of my lungs, thrown something across the room, and probably broken a few things and made some dents in the wall and then collapsed on the floor sobbing. That is where my heart is right now because I am so exhausted in every sense of the word and so sad for Skylar, for our family, for what we have to endure. Thankfully, Skylar was in the room so I held it in, not to scare her and I am sure our landlord is thankful too :)

Anyway, I had a good cry last night and one this afternoon when Skylar was struggling again. I keep noticing that it is after her feeds still so we're going to call the GI doc tomorrow and ask if he can take a look at her to see if her fundoplication is still in place and if we need to switch to more continuous feeds. I am also going to let our pulmonologist know what's going on to see if there's something we're not thinking of that she can help with. It's so frustrating not knowing what is causing this and not knowing how to make it better. My biggest fear is that there won't be anything and this is just the beginning of the end. I try with my whole heart not to think that way and certainly don't want it to be true, so that is all I am going to say of it. We could use your prayers for Skylar's happiness and ability to breathe - wisdom for her doctors and for us - and for my strength (Kyle's too) but emotionally for me dealing with it all day.

I'll write more soon - I have had a great week in the sense that I have been able to get to our church's Vacation Bible School this week and take pictures for them :) it's been great and the kids are all adorable and fun. It's been such a blessing and much needed time out of the house and behind a camera again. I miss it, but am so thankful for the time I have with Skylar so I'm not too worried about it - I'll have my chance again some day. I have also been helping Haven Womens Ministry with some design projects for an upcoming golf tournament event. The Hope and Light Foundation (a local SMA charity that has helped us with resources) is having a fund raising event coming up as well and I am working on a poster for them too. My plate is full. A dear friend from church has been coming to give me shoulder and back massages because I've been having problems with pain lately (too much bending and lifting maybe?). I also got my stitches taken out this morning (the third or fourth round of pre-cancerous moles) since Skylar's been born). Lots going on! Wanted to update you because it would be a novel if I waited any longer... Okay, gotta run! Peace.

Saturday, July 3, 2010

After a really rough week, we finally had a break yesterday and another great day today so far :) This past week, Kyle was out of town with work, and we hit a new record low for her pulse ox reading... we got down to 54 on her oxygen level on Tuesday and I hope I never have to see 50s again. She came out of it really quick, but it was still a little shocking. She dropped again that evening (I knew she would because even though she stabilized, I wasn't able to suction anything out - like big mucous plugs). The next day, we kept her on her bi-pap for a long time waiting for her new suction canister to arrive and to give her a break. I met with a nurse manager from Pediatria to discuss getting a nurse to help me out around the house - more on that soon. Skylar was only off bi-pap for a few hours and struggled a lot. The next day, I took her off bi-pap at the normal time, but had to put her back on for an afternoon nap, and then we put her on early that evening because she just seemed to be working so hard. It was all overwhelming. I was trying to figure out what changed. Did she all of a sudden get weaker? Is this nearing the end? What can I do to make it better?

After some thinking, I realized that her big drops in oxygen levels typically happened after her feeds. Currently, we're still doing bolus feeds during the day (feeds over an hour time instead of continuously all day) so her belly gets filled up, then she digests, and then after some time, we feed her again. It's more natural for the body and helps move things through if you know what I mean... However, I know a lot of SMA babies that can't handle bolus feeds and I think we reached a max volume and didn't realize it.

I experimented yesterday with dropping her feeds back to 4 ounces instead of 4.5, but it didn't seem to help too much. Then I tried 3.5 ounces and that seemed to be much better! So we're back to 3.5 ounces but we have to feed her more frequently now. She had a great day yesterday - the alarm on her pulse ox only went off twice the entire day and it was very small drops (high 80s) and it was easy to recover. She was extremely talkative and happy. Today has been great too. Some family came into town and she was showing off her gummy smile all day :) it's white, and getting a tough spot where I think a tooth is trying to poke through, but still nothing yet.

The good news is, she's reached 13 pounds :) she's getting so tall and I can't believe how much she's matured in her face. Sometimes I look at her and feel like I can get a glimpse of the little lady she could possibly grow up to be one day.

So back to the home nurse help - I think we might have a break coming! Since we've applied for medicaid, our doctor's office has appealed to our insurance company and asked them to help with a home nurse for a certain amount of hours to hold us over until medicaid will cover it. Pediatria, a home nurse company, contacted me and let me know our insurance will cover most of the costs and set up an appointment to meet with me to see what they could help with. India was a super nice woman and is working out the details to get me some help :)

Another huge blessing - we were running really low on breast milk for Skylar. I have been getting help from the moms at our church, friends of friends, etc. who have babies and are producing extra milk, but it's hard to keep a constant supply in our freezer. As I used the last bit of what we had, a friend pulled up with a small cooler bag with milk to hold us over that day. The next day, my friend had a flat tire and wasn't able to bring me her stash, but then a friend stopped by to bring us dinner and also brought a cooler full of her extra pumped milk! It was awesome!!! Then I got a phone call from a long lost friend in SC who said she has like 300 ounces in her freezer that she would love to give us. A friend is driving back to Atlanta that is visiting them and can bring it to us! It's amazing how things work out :) We've been so extremely blessed. I truly believe that the breast milk has helped keep Skylar healthy and as a side perk, has saved us money too!

The last thing I want to mention is that we've been nominated for Extreme Makeover Home Edition! I have always watched that show (and gone through lots of tissues) and been in awe of what they can do for families and how much it means to help. I never in a million years thought that I would ever be in a situation to qualify for the show. But here we are, struggling with medical bills, a mortgage on a rotting house located on a beautiful property that we had dreams of building on, and lots of special needs to care for Skylar and offer her the best life possible. So if you want to see us on the show, please click on the link at the top right hand side of the blog to go to our facebook page and tell ABC why they should pick us. If you don't have facebook, you can comment on this post, or snail mail a letter into the show: Lock & Key ProductionsC/O Family Casting5160 Vineland Ave, Suite 107PO Box #419North Hollywood, CA 91601

Thanks for your support everyone. It's a long shot to be chosen for the show, but it's fun to think about :) In the meantime, we're enjoying the good days and hoping for a great weekend. Kyle and I are going to attempt to go on a date tomorrow night so please pray that goes well too. We haven't been out just the two of us in months. We'll put Skylar on the bi-pap before we leave so there's not much more to do, but it'll still be weird leaving her :) Happy 4th of July weekend!!! Hope you enjoy the great weather, fun times and fireworks!

About Me

I love life. Even when it's not always great, it's better than not having it.

I started this blog as "expecting the unexpected" and didn't even know what was ahead! I was surprised with a pregnancy, delivered a beautiful little girl in Nov. 2009, and was later surprised with a diagnosis of SMA (spinal muscular atrophy) type 1. The Night Shift post in March 2010 is where the SMA journey begins... Our sweet girl went to Heaven on August 16, 2011 and is where Skylar's journey ends; however, ours carries on.